@marym
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Mary replied to the topic Covid-19 Vaccine, that’s a wrap! in the forum Coronavirus (COVID-19) and LEMS 1 month ago
Thank you
I am following what you find out! -
Mary replied to the topic Covid-19 Vaccine, that’s a wrap! in the forum Coronavirus (COVID-19) and LEMS 1 month ago
Price the only appointment i could get in our area for the Moderna Covid shot was 3 days after my IVIG and steroid infusions are tomorrow and every 2 weeks. Covid shot Wednesday. Appointments for the Covid injection is really hard to get and will be worse when it opens up for everyone.
Do you know of anyone who has had the shot that Close to IVIG?…[Read more] -
Mary replied to the topic Well, I’ve done it again. A LEMS Crash Saturday in the forum General Questions and Topics 1 month, 2 weeks ago
Mine occur periodically when i am anxious about something. Good or bad emotionally. The same happens. Im weak and cant lift my right leg. My feet drag when i finally get up
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Mary started the topic Cant decide if I should get Covid19 vaccine in the forum Coronavirus (COVID-19) and LEMS 1 month, 2 weeks ago
<p style=”text-align: left;”>I’ve asked Health Dept, several people in the medical field and the Infusion Clinic and still dont know what road to take. They refer me to my doctor. I get infusions every 2 weeks now with steroids. I asked Neurologist what the CDC has said if anything. if I should get vaccinated. He said I could get it but said it…[Read more]
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Mary posted a new activity comment 1 month, 4 weeks ago
Paul, i have had double vision for over a year until I got the steroid ,SolumedrolI when I had the IVIG 2 wks ago.. It only cleared up for one day. It makes me loose balance. The eye dr gave me glasses with prisms for reading. Riding in a car becomes frightening. What do you think helped your double vision?
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Mary replied to the topic What is your most troublesome LEMS symptom? in the forum General Questions and Topics 2 months ago
My arms and legs go weak it is hard to lift them. They flop and drop. Before treatment i would fall. Falling down steps was the finale in finding out just what was going on. My doctor ordered 1000 mg of steroid in the last IVIG yesterday and that has helped me today even my double vision has improved. Im a newby. Thanks for your comments
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Mary replied to the topic Firdapse Patient Assistance in the forum Amifampridine (Firdapse and Ruzurgi) 2 months, 1 week ago
I see the prices for Firdapse in USA. I could never afford it
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Mary replied to the topic What year where you diagnosed with LEMS? in the forum General Questions and Topics 2 months, 1 week ago
I was Diagnosed December 2020. The blood test came back as low. But my symptoms put me in the hospital 3 wks. Rehab 2 weeks. Im being treating for it with IVIG along with a steroid and Pyridostigmine and i hope it works. I have tube feed because. I got down to 99lbs. What i have read on this forum might be dated but i seem to relate to each. The…[Read more]
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Mary posted a new activity comment 2 months, 2 weeks ago
Ashley maybe u can answer this. I have extreme double vision. Hard to bv surf comments to find answer. How does that get corrected the Neaurologisr thinks maybe a higher dose of steroid might help but side effects bad
It is solumedrol. It helped in the hospital in the IVIG but I had several days in a row of it where this will be once every 3 wks.…[Read more] -
Mary posted a new activity comment 2 months, 2 weeks ago
Thank you!
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Mary posted a new activity comment 2 months, 2 weeks ago
I see double forgive typing errors
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Hey @marym
I also get IVIG but my treatment is every 4 weeks. The only vaccines I have been advised about not getting are live ones, but you should be able to get all others. I get a flu shot yearly. I would speak with your neurologist about the timing of vaccines so you get an adequate immune response and make antibodies. If it’s too close to…[Read more]-
Thank you!
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Ashley maybe u can answer this. I have extreme double vision. Hard to bv surf comments to find answer. How does that get corrected the Neaurologisr thinks maybe a higher dose of steroid might help but side effects bad
It is solumedrol. It helped in the hospital in the IVIG but I had several days in a row of it where this will be once every 3 wks.…[Read more]-
@marym I do not personally experience double vision and don’t know much about treating that specifically. I will be happy to post a topic about it here tomorrow morning and see if anyone here has experienced this and what helped them. I hope you can figure out something that works for you
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Mary posted an update 2 months, 2 weeks ago
@ashleygregory757
I have IVIG infusions every 3 ccx weeks. I’m on tube feed, Prednizone and Pyridodtigmine. At the infusion center the instructionscstaye not to get vaccines until several after IVIG stops. What about Covid-19 shots while being on this treatment. It really makes me nervous. Side effects from the shot I understand but what effect…[Read more]-
I see double forgive typing errors
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Hey @marym
I also get IVIG but my treatment is every 4 weeks. The only vaccines I have been advised about not getting are live ones, but you should be able to get all others. I get a flu shot yearly. I would speak with your neurologist about the timing of vaccines so you get an adequate immune response and make antibodies. If it’s too close to…[Read more]-
Thank you!
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Ashley maybe u can answer this. I have extreme double vision. Hard to bv surf comments to find answer. How does that get corrected the Neaurologisr thinks maybe a higher dose of steroid might help but side effects bad
It is solumedrol. It helped in the hospital in the IVIG but I had several days in a row of it where this will be once every 3 wks.…[Read more]-
@marym I do not personally experience double vision and don’t know much about treating that specifically. I will be happy to post a topic about it here tomorrow morning and see if anyone here has experienced this and what helped them. I hope you can figure out something that works for you
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Mary became a registered member 3 months ago
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Welcome to the forum Mary. My co-moderator Ashley and I are happy to have you. Please take the opportunity to look around the forum topics for areas you are interested in.
We’re glad to have you on board!
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@marym I do not personally experience double vision and don’t know much about treating that specifically. I will be happy to post a topic about it here tomorrow morning and see if anyone here has experienced this and what helped them. I hope you can figure out something that works for you